Monday, April 06, 2009






I am running on empty today as I am back from Boston and with that 3 hour time change and all the amazing memories floating through my head and thousands of photos to edit, sleep is not really in the cards.

Sarah Mattingly and I worked with a total of 14 children with Tay Sachs or related diseases and 4 adults with Tay Sachs. I also had time to take some shots of families that were in attendance who had lost their children to this devastating disease.

The last night of the conference I was asked to make a short presentation about Soulumination to supporters and researchers. The room looked stunning with the photos from the Soulumination Collection and I was honored to meet researchers who promise a cure is possible. At this event I met a mom who has a son with a disease that I had never encountered called Sanfillipo Syndrome. Since my flight home to Seattle was in the evening, it left time on Sunday to visit with Sam and his wonderful family. His mom and dad have a foundation called Ben's Dream, The San Filippo Research Foundation.

It was a powerful weekend and tomorrow we have our work party to make albums for the coming year. I share today photos of children that have thankfully survived since we worked with the NTSAD 2 years ago, Molly Grace, Elise, Rachel and Emma. In the next few days I will be sharing many more images. I need to get back to editing photos from this weekend, so I close in love and peace, Lynette